The Pediatric & SDH-Deficient GIST Consortium

The Pediatric& SDH-Deficient GIST Consortium is committed to:

Build a Consortium

Accelerate Research

Create Guidelines

Create and Expand Clinical Trials

Involve Patient Advocacy Groups

Why a Pediatric & SDH-Deficient GIST Consortium?

There is a subset of GIST which specifically affects children and young adults with a resistant form of GIST for which the current battery of drugs are not particularly effective. Since the number of these types of patients is relatively small and the nature of this subset comparatively complex, progress finding effective treatment has been difficult.

Historically, most researchers with an interest in Pediatric & SDH-Deficient GIST worked independently from other GIST researchers, with each seeing very few of these rare disease patients. The National Institutes of Health (NIH) Pediatric and Wildtype GIST Clinic was established in 2008 with the support of advocacy organizations, to bring together clinicians and patients, to begin to better understand this rare disease. After 10 successful years, this program is at a crossroads, just at a time when no standard of care for this rare disease has been defined.

Based on this need, the Life Raft Group created and convened the inaugural Pediatric & SDH-Deficient GIST Research Symposium on July 14-15th at Life Fest2018 in Miami. The goal of the symposium was to gather key clinicians/researchers to identify KIT-independent therapies for targeting SDH-Deficient tumors in order to improve patient outcomes.

An outgrowth of the symposium was the formation of the Pediatric & SDH-Deficient GIST Consortium. The aim of the consortium is to extend and sustain the work of the NIH Clinic and other research efforts, with the ultimate goal of finding a cure through global collaboration. As patients’ survival and quality of life are dramatically impacted by this disease, it is critically urgent that the leading Pediatric & SDH-Deficient GIST experts collaborate and share data and tissue, with the goal of finding successful targeted therapies that can help keep these patients alive.

The Life Raft Group is a 501 (c)(3) non-profit organization (tax id: 82-0547746) providing support through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). View our 990 Form here

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International Patients

GIST knows no boundaries.
The Life Raft Group focuses on several key pillars. One of those pillars is “to increase access to effective treatments worldwide.” We aid patients from the United Kingdom to India and Kenya, helping wherever GIST patients are in need. Our patient registry staff interacts with global patients daily. The LRG Patient Registry has members from 63 countries, with country liaisons from 61 countries.
We present at international symposiums on GIST, support global advocacy issues, and work to establish alliances and collaborations. We want to ensure that GIST patients across the world have access to the best possible treatment.